I am continuing to post about the FDA's decision to withdraw midodrine, my 'magic medicine', from the market. For those of you who are willing to help try to keep this medication on the market, I am told that one of the best ways to speak up is to CALL the FDA. They are counting our calls!
I called the FDA yesterday. It took about two minutes, and I did speak to a person. Some of my friends have relayed that they are getting voice mail, but someone should call you back. Here are the instructions as given on DYNA (Dysautonomia Youth Network of America, www.dynakids.org):
Call the FDA's Office of Drug Information at: 888-463-6332. You will be given selection options so listen to them carefully. You will want to select #4 Speak to a Representative, # 3 Human Drugs, #1 Human Drugs. You may have to leave your name and contact information on a recording. Be sure to speak very clearly and repeat your name and phone number for clarity. Tell them that you are responding to the FDA proposed withdrawal of Midodrine / ProAmatine and that you wish to object. Be sure to make note of the time of your call, the individual you spoke to and the details of the conversation.
The other fast and easy option is to email the FDA using the letter and link provided in my previous post. They are also keeping track of emails. If you email, you will receive an automated response within 48 hours, confirming that your opposition to the withdrawal was received.
If you are feeling super energetic you can send the same email to 1. Dr. Janet Woodcock the
Director FDA/CDER at janet.woodcock@fda.hhs.gov, and 2. Dr. Norman Stockbridge the Director Division of Cardiovascular and Renal Drugs at norman.stockbridge@fda .hhs.gov
If you haven't already read about how the withdrawal of this medication will affect my life, you can read about it here.
Thank you to everyone who has been speaking up on my behalf and on behalf of others who rely on this medication to get out of bed every day.
When it comes to the battle to keep midodrine available, I'm using the approach that the squeaky wheel gets the grease!!
A million thanks to those of you are have helped with this! I have been really moved by the response of friends and family.
I am not sure of the accuracy of this information, but a friend spoke with an FDA representative today and was told that a meeting would be held at the end of this week. All correspondence received will be presented at this meeting.
I have also been working on snail mail to the FDA, as well as letters to my representatives, but did not have enough energy left to post the information and create pre-written letters. I will try to do that in the next few days for those who are interested.
Blessings,
Emily
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